An Open Letter to the Moms of Children with Childhood Apraxia of Speech (Guest Post by Janelle Bennett)

At first, when writing down my thoughts about the 2017 National Conference on Apraxia of Speech, I wanted to talk about what I had learned. We all know how challenging it can be to find information about Apraxia! However, when I started writing, I realized I had to put into practice what I had just been taught.

In her lecture at the Conference, Cari Ebert, M.S., CCC-SLP, emphasized the importance of our kids being in the right frame of mind before they can be taught. We, as moms, are no different. We need to take care of the whole person. Apraxia doesn’t have the child, the child has Apraxia, and as a result we are moms dealing with Apraxia. So, before I can talk about tongue poppers, PROMPT, sensory issues, and rate of speech, I need to address you, Mom, and the person you have become since beginning your very own journey with Apraxia.

Apraxia can make you feel isolated and alone, oftentimes, leaving you feeling like you are on your very own island. How fitting, then, that for my first CASANA conference, I was on an island in San Diego. Not only was I on an island, but I was on this island with a whole community that gets it.

CASANA is more than an acronym. It is a community that was built by parents searching for support, for cohesiveness, for an answer. Along the way they found friendship, and built a foundation for generations to come.

Through the mentors, SLPs, and other parents, I not only learned about Apraxia, but I learned so much about myself.

As a fundraiser, you could buy tickets and test your luck to see if you are fortunate enough to win a one-on-one lunch with one of the presenters from the Conference. Wouldn’t you know, I was a lucky winner and there on the final day, I found myself sitting with the one and only Kathy Jakielski! What do you ask someone who has so many of the answers? How can she help my son Evan? What questions should I ask her? But this amazing Kathy, she not only saw a mom desperate in her search to help her son, but she saw a mom in desperate need for help herself. Help that I didn’t even know I needed.

I am going to share with you what she said, because as much as it was directed towards me, it’s a message that every mom needs to hear.

She told me: your child is the luckiest child because they have you. Take care of yourself, because if you go under, there is no one to replace you. Without you, the rest can’t happen. Give yourself the credit you deserve. Value yourself for the key part of success that you have had in your child’s journey.

There were so many great things that I took from this Conference and I feel like I will be dreaming of motor planning for weeks!

One key concept I will forever remember from an amazing presentation by Alyson Taylor and her mom, is to not forget about the child and to not limit their dreams. Apraxia is only one part of our children. There are so many things that make our children so great. For my Evan, tractors, skid steers, cows, sandboxes, swings, pie and books all help define him. Don’t ever stop making dreams for our kids with Apraxia; as Alyson states, dreaming is the first step to achieving.

When people ask me about the Conference, I share the importance of early recognition and how imperative language therapy is for Apraxia and not just the typical speech articulation therapy needed for motor speech difficulties. I tell them all I learned about sensory issues; how I now understand why transitioning from pants to shorts was such a process for Evan this summer, and that there is a reason why loud noises and big crowds will make him cover his ears and curl into himself. I learned that potty training was beyond challenging, not because he was a boy but because – you guessed it – he has Apraxia! Learning about the difficulties many children with Apraxia have learning to read was fascinating, but most likely that is because I am a primary teacher who sees children struggling to read every day. Every single lecture at the Conference was mind blowing because everyone there knows exactly what I was going though. I took great comfort and support in knowing other families are going though the exact same struggles and challenges as I am.

I will admit that there was one thing at this conference that surprised me. I was surprised by how few people were in attendance – and was told by CASANA it was one of their larger crowds. Although the smaller number of 325 people made it more intimate and gave it a family feel, I couldn’t help but wonder, how was this conference not overflowing with moms like me? Aren’t all moms scared, confused, lonely and disoriented when it comes to Apraxia? And the SLPs? I know there are tons out there scratching their heads trying to understand why their clients aren’t having the growth and progress they would like to see. When all they need is right here at this conference, and for me who was so thirsty for knowledge and answers, I was shocked not to see more at this incredible overflowing fountain of knowledge and resources.

If the reason you have yet to attend this Conference is because you can’t afford it, let me say that before I attended, I would have understood. Speech therapy is expensive! Every extra dollar goes towards it, I know. But now having attended, all I can say is, you can’t afford not to go. The friendships and connections you will make, the information you will take home, and the hope and excitement you will leave with to battle the tomorrows are invaluable, and I personally think part of the secret to conquering Apraxia.

For me, the CASANA Conference was like finding home when I didn’t even know I was lost.

So, to the Moms of Apraxia, I see you. You are enough, you are doing a great job, and your child is so lucky to have you.

Thank you CASANA for changing the course of our journey, for my son and our family, for the better. Thank you for taking care of me, as a warrior and advocate, but most importantly as a Mom of Apraxia.

Janelle Bennett attended her first National Conference on Childhood Apraxia of Speech in July 2017 but has been an active advocate and awareness-raiser since becoming involved with the Apraxia community in May 2016. She lives in rural Ontario with her husband and their 3 children, one of whom has Childhood Apraxia of Speech. Janelle is a grade 1 French Immersion teacher & loves implementing the techniques and tools she learns during speech sessions in her classroom.

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The content of this website is not meant to replace the advice and care of an Allied Health or Medical Professional. For in depth information on Childhood Apraxia of Speech, please visit Apraxia-KIDS.org. This site is not affiliated with CASANA or Apraxia KIDS. Please Contact: info@oppencas.ca with any concerns, suggestions or corrections with regards to the content of this site.

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